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Doctors, Patients Differ on End-of-Life Care Preferences


Patients and caregivers prefer thinking in terms of quality of life over quantity of life, though their physicians may not be on the same page.

Patients with advanced stages of cancer prefer to have frank end-of-life discussions early in the course of their therapy, while physicians often delay these dialogues, previous research has shown.

Physicians struggle further when balancing the options of treating cancer versus treating cancer pain. While prior studies have also explored baseline preferences in physicians and cancer patients for considering end-of-life options, there has not been a study on the influence of physicians’ baseline feelings over patient preferences.

In the first study of its kind, researchers explored the association between patient, caregiver, and physician preferences in discussions of end-of-life care and Medicare allocations.

The study, published in JAMA Otolaryngology—Head & Neck Surgery, found patients with cancer and their caregivers are influenced by their choices of quality of life over quantity of life, while physicians are unaltered by these preferences.

The study utilized a modified version of the Choosing Healthplans All Together (CHAT) tool, which examines individual versus group preferences in settings with limited resources. Daniel J. Rocke, MD, JD, and colleagues at Duke University Medical Center, Division of Otolaryngology, Head and Neck Surgery adapted the modified CHAT test further, creating an online, single-round survey.

Instead of 4 rounds, the faster model of the survey allowed physician participants to prioritize Medicare options for advance-stage cancer patients using limited resources. By removing the other 3 rounds of the CHAT tool, group prioritization and a second individual round were eliminated, though patients with cancer and their caregivers used all 4 rounds of the tool.

The researchers compared the single round of physician data to the fourth round of individual participation, which allowed the patients and caregivers more time to familiarize themselves with medical jargon. The Medicare support options to choose from were: advice, cash, cosmetic care, complementary/alternative, dental/vision, drugs, emotional, home care, home improvements, house calls, nursing facility, other, palliative care, primary care, treatment for cancer, though participants did not have to utilize each resource.

All advanced care patients—defined as a cancer that is not generally curable and is expected to shorten a person’s life—and their caregivers were invited to participate. Members of the American Academy of Otolaryngology-Head and Neck Surgery (OHNS) were invited to participate in the study via email to create their own personalized Medicare plans for cancer patients.

Before using the modified CHAT tool, all participants answered 3 health attitude questions:

1. Would you rather have 1 year of life at 100% health or 10 years of life at 10% health?

2. Would you rather have 2 years of life at 50% health or 4 years of life at 25% health?

3. Would you rather have 4 years of life at 25% health or 8 years of life at 12.5% health?

The researchers then compared the physicians’ responses to the 146 patients’ and 114 caregivers’ responses. No significant differences between patients’ and caregivers’ responses were found, so the 2 groups were combined for analysis purposes.

Doctors who favored 100% health for 1 year of life in the first question tended toward allocating more cash for their personalized Medicare plan. Patients and their caregivers who favored 1 year of life at 100% health allocated their resources toward other medical care and palliative care, but fewer resources for cancer treatment.

In the second question, physicians who preferred 2 years of life with 50% health over 4 years of life with 25% health more commonly allocated resources for less drug coverage. Patients and caregivers who favored 2 years of life at 50% health chose more coverage to other medical care and palliative care, but less care for cancer treatment and home improvement.

OHNS physicians who preferred 4 years of life at 12.5% health in the third question elected less home coverage and more nursing facility coverage. Those patients and caregivers that preferred the same wanted more coverage in palliative care and less coverage in complementary/alternative care.

“The main point of these questions was, broadly speaking, to separate those who value quality of life from those who value quantity of life,” the authors wrote. “However, the benefit categories that were significantly different for each question did not always present a consistent pattern as each respondent group progressed from question 1 to 3.”

No consistent trend emerged for physicians, which suggests to the authors the answers to the 3 questions do not factor into physicians’ end-of-life care decision making. However, consistent trends emerged for patients with cancer and their caregivers: the answers to the first and second questions significantly affected treatment for cancer and other medical care.

“I think physicians should recognize that there are differences and that these differences persist even when physicians ‘put themselves in the patients' shoes,’” Rocke said. “So we can't overcome these differences with just a mental exercise. I think a recognition of these differences would make physicians enter into these conversations with fewer assumptions about what their patients are thinking, and maybe the physician would spend more time listening.”

The authors recommend an open acknowledgement of these differences between patients, caregivers, and physicians to allow more effective end-of-life discussions between the parties.

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